I can not even remember all the stuff that has happened since the last time I updated. Life around the Lewis house changes so quickly, it is hard to keep up. Most notably I guess is that Jonathan just left tonight to go to Connecticut for an un-determined period of time. We got a phone call on Friday night from his sister telling us that his grandma was found unconcious on the kitchen floor and had suffered a major stroke. They took her off the ventilator today and have moved her to a hospice room, no hope of recovery, the stroke was just too major. I am praying that he makes it there before she passes so he can say good bye to her.
It was obviously a bad week for grandmas because last week my grandma had a heart attack. She is back home now and recouperating, had 2 stents placed and is back to her spunky self...she did get to ride in a helicopter which was neat for her (she lives on the eastern shore so she got flown to the heart hospital here).
Elijah's diabetes has been massively out of control, check out his diabetes blog for an update. I also ened up taking him to the ER this past weekend becasause I noticed on Friday that he had a huge mass on the side of his neck, about the size of a ping pong ball. The doctor said he thought it was a lymphnode that was fighting off some kind of bacterial infection but he could not figure out which one. His strep test was negative, his throat looked normal, his ears were clear and there were no obvious signs of any infection. They put him on antibiotics and he has 2 days left on those. The swelling is still there, although I think it may finally be shrinking. If it is not down significantly by friday I am supposed to take him back to the doctor so hopefully the antibiotics will work. I have started having anxiety over this darn thing. Especially since he has been having horrible sweating at night and has been feeling like crud...constantly telling me he is tired and wants to go to bed...which is highly unusual for him. I just wish he felt better. He is still as sweet as ever and very clingy to me, guess he is going through a mommy phase :) He an Elsie just celebrated their 3rd birthday along with Isabella and her 4th. It was a makeshift last minute party but they enjoyed themselves.
Isabella has started dance and is really enjoying it. Elsie goes to dance too, but that involves dressing up like Isabella and going to the studio with us and clinging on to me, not speaking to anyone in the waiting room. She has soooo much social anxiety. Although I do feel she is improving somewhat, it is painful for me to watch her be tormented by her anxiety in groups and in social situations. It makes me so sad to hear so many people she knows wonder if she can speak at all. Most people never believe me when I tell them what a chatterbox she is at home. I hate to see her struggling in silence. She wants to participate so badly but then becomes paralyzed with fear and it makes me sad :( These girls are my beautiful princesses and Jonathan is already anticipating all the problems he is going to have in the not-so-distant future with them...they have a piece of his heart for sure :)
Nathaniel has been ...well...Nathaniel. His rages have gotten way worse for some reason. He has ODD (oppositional defiant disorder) and has been having a really difficult time of things. I am not sure why but he had a rage fir for 4 hours on sunday, probably the longest one he has had. As he getss older and stronger, more things get damaged. He has been having 2 or 3 episodes a day and it has become utterly exhausting. I dont know what else to do. His physchologist helps but its not like they can give them some medication to help, behavior modification takes alot of time to work, but it seems to be making everything worse. He is such a sweet boy when he is in a good mood, sometimes he is like a light swtich I just can not figure out what turns him off and on...I think that is the most frustrating part.
Caity has been plugging away at schoolwork. Her ADD is a constant problem and she still has difficulty with her focus and distractibility as well as impulsivity which makes it very difficult for her to make friends. She is advancing quite well in her gymnastics and cheerleading. Three weeks ago she perfected her back handspring and is now working on her double back handspring. She could be even so much farthur than she is right now if her confidence was higher. She has such a defeatest attitude that it makes me feel bad. She is so good at things she really puts her heart and soul into, I wish she could see it more.
William is doing very well in school...he is so smart! He really is quite advanced for his age and I am afraid he will almost be on the same level as Caity in some subjects by the end of next year. Socially...well...school has not been everything I was hoping it would be for him. I basically sent him to school instead of keeping him home with Caity to help him with his social interactions which were severely lacking. Well he has either been in trouble or been witness too it most of the year. He will be starting school at home with Caity this summer. At his checkup the doctor was pleased with his progress and suggested that he did indeed have autism, but that Jonathan and I had done so much for him early on that we have been able to get him to a point now at 6 years old, that he is only coming up as borderline on the testing. That makes me feel very proud as a parent. That even without some crazy diagnosis we were able to recognize his difficulties early on in life and help him learn to adapt to life with a special brain.
So as usual, to summerize our life...things could always be worse than they are and we are so thankful to the Lord for all of the blessings he bestows on us. He is a great God and I will certainly praise him in the sun and in the storm for always remaining faitful to us even when we are not faithful to him.
Showing posts with label ODD. Show all posts
Showing posts with label ODD. Show all posts
Tuesday, March 31, 2009
Wednesday, September 17, 2008
WOW...it has been a long time
I started this blog to keep people updated and I have really dropped the ball. Oh well...it has been a LONG summer. So many things have happened, I do not even know where to start.
Me-well, same old same old I guess. Nothing major has happened. I
have had a few flares of symptoms of my "unknown illness" because of the awful heat we have been having. Currently I am having some problems with my balance and dizziness and almost got into an accident 2 days ago because i got so dizzy behind the wheel. JOnathan wont let me drive now. I am also having blurry vision in my left eye (again). I guess it is back to the eye doctor. Otherwise my multiple meds seem to be controlling my other symptoms to a tolerable level. I have finally gotten back into exercising everyday...something I have not been able to do in a while. I was hoping it would make me feel better...more energy and everything, but so far I just feel more weak and tired instead of more energized...oh well, gotta give it time I guess.
Jonathan-having some problems with his leg (for those who do not know he has a spinal cord injury and is partially paralyzed). He had his annuel exam at the VA and got a prothesis to help him keep his foot from dragging and help him not trip so much. He quit his sales job and is currently looking for something new (he wasn't making much money anyway). It has been really nice having him home during the day though. I think otherwise he has been about the same.
Caity-My beautiful butterfly...we started homeschooling in July. I have to teach her year round because she forgets too much over the summer. I think this is going to be a really good year for her. She is doing much better with her focus and controlling some of her behaviors that stem from some of her mental health issues. We have been concentrating on math since she got so behind last year because of her probable learning disability in math. It is amazing that she is spelling and reading at almost the fifth grade level and her math skills are still at between first and second grade. Our primary goal this year is to even out her skills...hopefully we can accomplish that before her next testing in May.
She is continuing with her cheerleading and has now started gymnastics as well which she is truly enjoying and is really challenging her physically (and challenging us financially). She has met some new friends and has really made some progress learning how to control her impulsivity and being a team player.
I have been trying very hard to keep her off medication for her ADD, anxiety, depression, etc. And so far we have managed. We did finally start her on some medication to help with her sleep and I think it has been very benificial. It is amazing the difference in behavior when kids get enough sleep.
William-My intelligent athlete...doing great. Still going through his developmental testing to see if he needs any interventions. He does have a sleep disorder and is being treated for that. He was being homeschooled this summer and did well. He now knows his addition and subtraction facts to 20 and phonics as well as is spelling some words. He begged me to let him go to kindergarten and ride the bus and since I am really working hard to get Caity up to speed, I told him he could go. Now its 2 weeks in and I was a little shocked when he came home and is supposed to learn the ABC song...he is so beyond that. I can not believe there are kendergarteners who do not know their ABCs. My 2 year olds know their ABCs!! So basically school is just a chance for him to work on his social skills and have some fun...which I am OK with for now...we still work on extra skills at home.
He is having a great time playing soccer again and is the star of the team although he has trouble sharing the ball. He is also doing gymnastics now and can not get enough of it. I can truly see him being a gymnast one day. He is working on perfecting his cartwheel and balance beam routine.
Nathaniel-oh...my sweet child of extremes. Health wise...he has been doing great...no more problems from that pesky lymph node. He has bad allergies and is on several meds for that...we finally got all of those symptoms under control and the doctor said that his bad allergies were probably causing all his problems. We found a good combo of meds that works for him. Behavior wise...he (and I) are having issues. He is in therapy now to help us with some of his problems. They have not given us a diagnosis yet. The doctor thought he may have bipolar disorder but I do not think so. His therapist says most likely he has ODD (oppositional defiant disorder) which is treated with behavior modification but can be very frustrating. He is a very sweet and loving boy but can be so trying at times. His therapist says his IQ is very high which could be the cause of some of his problems (too smart for his own good I guess).
I have not started schooling him yet. He is just not ready. We have been working on learning how to write his name and recognize letters but otherwise I just let him get out his energy as much as possible. He is also playing soccer again and is doing much better this year than last. He is much more confident this time and scored 4 goals in his first game. He was so proud!!
Isabella-My supreme princess. Has been doing well. She finally got to 23 pounds and was able to go off her supplements and drop back her GI and rehab visits to 2 times a year. GREAT!! We were so worried that she would end up with a Gtube. We finally had a visit where we did not have to discuss that as an option. She had a small bought of cellulitis and had hernia surgery which went great. Besides some mirilax every now and then she is on no meds. She is doing well and we are praising God for it.
She has learned her ABCs and numbers and is very interested in all things girly!! She has become quite brave physically and is doing more things with her body...I think her increased weight has finally helped her use her body more when she is playing. She is still very sensitive and screams all the time which drives me crazy!! She is desperate to take dance classes but we do not know if we can afford it right now.
Elsie-My headstrong diva. She is so beautiful and her speech is amazing but no-one knows that she can talk. She has some sort of selective mutism and only speaks at home alot of the time. Most of her sunday school teachers do not believe that she can talk. This little girl is so smart, we are going to be in trouble soon. She picks up info like a sponge. She loves to sing, dance and color beautiful pictures. She is a daredevil at play but still likes to be a girly girl. She is absoloutly obsessed with wearing dresses and fancy shoes...she always has shoes on and raids the shoe closet every morning. She even sleeps with them on!! She is already counting to 12, saying her ABCs and knows her shapes and colors. She has taken up the gymnast habits of some her older siblings and loves to do "slips (flips)" off the couch. She is healthy as a horse...definately taking after her father so she never seems to get sick. I am looking forward to watching her grow.
Elijah-The loving enforcer. He is so fun and has a great laugh. He goes around the house enforcing all the rules...lovingly at times...other times forcefully. His speech is coming along. He was supposed to have speech therapy but by the time I was able to get him an eval he was talking better so I did not get him set up for that. We have just been working on it with him at home. He has done really well following his surgeries and his ear tubes, along with allergy medicine has finally relieved alot of his ear and sinus infections and diarrhea (his allergies were even causing diarrhea-who knew=). He still gets sick alot but besides a small abcess on his foot from a boo-boo I do not think he has had any major illnesses this summer. He loves to play football, has learned to count to 3 and is just a wonderful snuggly boy who loves to give hugs and kisses.
Adam-Our little Godzilla. He is still with us and is moving toward reuniting with his parents. We call him Godzilla because he grabs everything he can get his hands on and snatches things away. Plus he is a little clumsy so he falls on top of things alot. He is a sweet boy and has made tremendous progress since his arrival. He is doing speech therapy now and can actually say some words now so he can communicate a little better with us. He is learning how to follow directions and we have been also doing a little "eating therapy"...working on using a fork, drinking from a cup, chewing food instead of swallowing whole, etc. He is doing very well physically. He is very active so he does get alot of injuries but otherwise he is very healthy. I hope when he goes back his parents really use this second chance to love a nurture this child. We do not know when he will go back...I am hoping he is home before the holidays so the family can be together. We pray that God will be with him and his family.
Well...to make a long story short...life has been pretty good these last few months. We are very busy between doctors, therapists, school, extracarricular activities, church and some other things thrown in there. I have some new pictures to post but right now I need to go to bed.
Me-well, same old same old I guess. Nothing major has happened. I
have had a few flares of symptoms of my "unknown illness" because of the awful heat we have been having. Currently I am having some problems with my balance and dizziness and almost got into an accident 2 days ago because i got so dizzy behind the wheel. JOnathan wont let me drive now. I am also having blurry vision in my left eye (again). I guess it is back to the eye doctor. Otherwise my multiple meds seem to be controlling my other symptoms to a tolerable level. I have finally gotten back into exercising everyday...something I have not been able to do in a while. I was hoping it would make me feel better...more energy and everything, but so far I just feel more weak and tired instead of more energized...oh well, gotta give it time I guess.
Jonathan-having some problems with his leg (for those who do not know he has a spinal cord injury and is partially paralyzed). He had his annuel exam at the VA and got a prothesis to help him keep his foot from dragging and help him not trip so much. He quit his sales job and is currently looking for something new (he wasn't making much money anyway). It has been really nice having him home during the day though. I think otherwise he has been about the same.
Caity-My beautiful butterfly...we started homeschooling in July. I have to teach her year round because she forgets too much over the summer. I think this is going to be a really good year for her. She is doing much better with her focus and controlling some of her behaviors that stem from some of her mental health issues. We have been concentrating on math since she got so behind last year because of her probable learning disability in math. It is amazing that she is spelling and reading at almost the fifth grade level and her math skills are still at between first and second grade. Our primary goal this year is to even out her skills...hopefully we can accomplish that before her next testing in May.
She is continuing with her cheerleading and has now started gymnastics as well which she is truly enjoying and is really challenging her physically (and challenging us financially). She has met some new friends and has really made some progress learning how to control her impulsivity and being a team player.
I have been trying very hard to keep her off medication for her ADD, anxiety, depression, etc. And so far we have managed. We did finally start her on some medication to help with her sleep and I think it has been very benificial. It is amazing the difference in behavior when kids get enough sleep.
William-My intelligent athlete...doing great. Still going through his developmental testing to see if he needs any interventions. He does have a sleep disorder and is being treated for that. He was being homeschooled this summer and did well. He now knows his addition and subtraction facts to 20 and phonics as well as is spelling some words. He begged me to let him go to kindergarten and ride the bus and since I am really working hard to get Caity up to speed, I told him he could go. Now its 2 weeks in and I was a little shocked when he came home and is supposed to learn the ABC song...he is so beyond that. I can not believe there are kendergarteners who do not know their ABCs. My 2 year olds know their ABCs!! So basically school is just a chance for him to work on his social skills and have some fun...which I am OK with for now...we still work on extra skills at home.
He is having a great time playing soccer again and is the star of the team although he has trouble sharing the ball. He is also doing gymnastics now and can not get enough of it. I can truly see him being a gymnast one day. He is working on perfecting his cartwheel and balance beam routine.
Nathaniel-oh...my sweet child of extremes. Health wise...he has been doing great...no more problems from that pesky lymph node. He has bad allergies and is on several meds for that...we finally got all of those symptoms under control and the doctor said that his bad allergies were probably causing all his problems. We found a good combo of meds that works for him. Behavior wise...he (and I) are having issues. He is in therapy now to help us with some of his problems. They have not given us a diagnosis yet. The doctor thought he may have bipolar disorder but I do not think so. His therapist says most likely he has ODD (oppositional defiant disorder) which is treated with behavior modification but can be very frustrating. He is a very sweet and loving boy but can be so trying at times. His therapist says his IQ is very high which could be the cause of some of his problems (too smart for his own good I guess).
I have not started schooling him yet. He is just not ready. We have been working on learning how to write his name and recognize letters but otherwise I just let him get out his energy as much as possible. He is also playing soccer again and is doing much better this year than last. He is much more confident this time and scored 4 goals in his first game. He was so proud!!
Isabella-My supreme princess. Has been doing well. She finally got to 23 pounds and was able to go off her supplements and drop back her GI and rehab visits to 2 times a year. GREAT!! We were so worried that she would end up with a Gtube. We finally had a visit where we did not have to discuss that as an option. She had a small bought of cellulitis and had hernia surgery which went great. Besides some mirilax every now and then she is on no meds. She is doing well and we are praising God for it.
She has learned her ABCs and numbers and is very interested in all things girly!! She has become quite brave physically and is doing more things with her body...I think her increased weight has finally helped her use her body more when she is playing. She is still very sensitive and screams all the time which drives me crazy!! She is desperate to take dance classes but we do not know if we can afford it right now.
Elsie-My headstrong diva. She is so beautiful and her speech is amazing but no-one knows that she can talk. She has some sort of selective mutism and only speaks at home alot of the time. Most of her sunday school teachers do not believe that she can talk. This little girl is so smart, we are going to be in trouble soon. She picks up info like a sponge. She loves to sing, dance and color beautiful pictures. She is a daredevil at play but still likes to be a girly girl. She is absoloutly obsessed with wearing dresses and fancy shoes...she always has shoes on and raids the shoe closet every morning. She even sleeps with them on!! She is already counting to 12, saying her ABCs and knows her shapes and colors. She has taken up the gymnast habits of some her older siblings and loves to do "slips (flips)" off the couch. She is healthy as a horse...definately taking after her father so she never seems to get sick. I am looking forward to watching her grow.
Elijah-The loving enforcer. He is so fun and has a great laugh. He goes around the house enforcing all the rules...lovingly at times...other times forcefully. His speech is coming along. He was supposed to have speech therapy but by the time I was able to get him an eval he was talking better so I did not get him set up for that. We have just been working on it with him at home. He has done really well following his surgeries and his ear tubes, along with allergy medicine has finally relieved alot of his ear and sinus infections and diarrhea (his allergies were even causing diarrhea-who knew=). He still gets sick alot but besides a small abcess on his foot from a boo-boo I do not think he has had any major illnesses this summer. He loves to play football, has learned to count to 3 and is just a wonderful snuggly boy who loves to give hugs and kisses.
Adam-Our little Godzilla. He is still with us and is moving toward reuniting with his parents. We call him Godzilla because he grabs everything he can get his hands on and snatches things away. Plus he is a little clumsy so he falls on top of things alot. He is a sweet boy and has made tremendous progress since his arrival. He is doing speech therapy now and can actually say some words now so he can communicate a little better with us. He is learning how to follow directions and we have been also doing a little "eating therapy"...working on using a fork, drinking from a cup, chewing food instead of swallowing whole, etc. He is doing very well physically. He is very active so he does get alot of injuries but otherwise he is very healthy. I hope when he goes back his parents really use this second chance to love a nurture this child. We do not know when he will go back...I am hoping he is home before the holidays so the family can be together. We pray that God will be with him and his family.
Well...to make a long story short...life has been pretty good these last few months. We are very busy between doctors, therapists, school, extracarricular activities, church and some other things thrown in there. I have some new pictures to post but right now I need to go to bed.
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